2024-11-12T12:50:39-06:00 2023-12-31 871353108 EISNER ADVISORY GROUP LLC 733 THIRD AVENUE NEW YORK NY 100172703 990 2023-01-01 133349872 HUNTINGTON'S DISEASE SOCIETY OF AMERICA INC HUNT 2122421968 505 EIGHTH AVENUE SUITE 1402 NEW YORK NY 10018 ARIK JOHNSON INTERIM CEO 2122421968 2024-10-24 1 0 WILLIAM EPSTEIN P01307171 2129498700 2023 2024-10-15 13:58:12Z ARIK JOHNSON 505 EIGHTH AVENUE SUITE 1402 NEW YORK NY 10018 10994752 0 9201 X WWW.HDSA.ORG X 1986 NY DEDICATED TO IMPROVING THE LIVES OF PEOPLE WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES. 16 16 37 500 0 0 10470080 9341469 0 0 29528 148302 210357 344165 10709965 9833936 2936064 3678844 0 0 3816774 4204759 0 0 1641911 2665264 3273845 9418102 11157448 1291863 -1323512 17419711 18147360 2232998 4277717 15186713 13869643 X HUNTINGTON'S DISEASE SOCIETY OF AMERICA, INC. IS A NATIONAL VOLUNTARY HEALTH AND WELFARE ORGAIZATION DEDICATED TO IMPROVING THE LIVES OF PEOPLE WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES. 0 0 2704563 1503371 RESEARCH - SUPPORTS RESEARCH AS ADVISED BY ITS SCIENTIFIC ADVISORY BOARD. THE RESEARCH PROJECTS ARE INVOLVED IN FINDING CURES AND TREATMENTS FOR HUNTINGTON'S DISEASE. 3339985 2025516 PATIENT AND FAMILY SERVICES - PROVIDES COUNSELING AND REFERRAL SERVICES TO PATIENTS WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES. 858763 COMMUNITY OUTREACH - PROVIDES WORKSHOPS, SEMINARS, AND SYMPOSIUMS ON HUNTINGTON'S DISEASE THROUGH A NETWORK OF CHAPTER AFFILIATES AND BRANCHES THROUGHOUT THE UNITED STATES. 1925755 149957 EDUCATION PROVIDES INFORMATION AND EDUCATION THROUGH PUBLICATION AND DISTRIBUTION OF NEWSLETTERS, BROCHURES AND SCIENCE UPDATES 1925755 149957 8829066 1 1 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 0 0 0 1 1 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 1 X 79 0 37 1 0 0 0 0 0 1 1 0 0 0 1 0 0 0 X 16 16 0 0 0 0 0 0 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 AL AK AZ AR CA CO CT DE FL GA HI ID IL IN IA KS KY LA ME MD MA MI MN MS MO MT NE NV NH NJ NM NY NC ND OH OK OR PA RI SC SD TN TX UT VT VA WA WV WI WY X ROSEMARY COLUCCIO 2122421968 505 EIGHTH AVENUE SUITE 1402 NEW YORK NY 10018 VICTOR SUNG MD PAST CHAIR 6.00 3.00 X X 0 0 0 TERESA SRAJER CHAIR 6.00 3.00 X X 0 0 0 KAMRAN ALAM TREASURER 6.00 3.00 X X 0 0 0 JENNE COLER-DARK CHAIR ELECT 6.00 3.00 X X 0 0 0 JAY HUGHES SECRETARY 6.00 3.00 X X 0 0 0 ANGELA ALLEN TRUSTEE 6.00 3.00 X 0 0 0 JEFFREY BROWN TRUSTEE 6.00 3.00 X 0 0 0 JEFF CARROLL TRUSTEE 6.00 3.00 X 0 0 0 MARK COE TRUSTEE 6.00 3.00 X 0 0 0 ERIN FURR-STIMMING MD TRUSTEE 6.00 3.00 X 0 0 0 BETH HOFFMAN TRUSTEE 6.00 3.00 X 0 0 0 JONATHAN KLEIN ESQ TRUSTEE 6.00 3.00 X 0 0 0 KELSEY PORTER TRUSTEE 6.00 3.00 X 0 0 0 DOMINIQUE THOMAS TRUSTEE 6.00 3.00 X 0 0 0 LESLIE M THOMPSON PHD TRUSTEE 6.00 3.00 X 0 0 0 VICKI WHEELOCK MD TRUSTEE 6.00 3.00 X 0 0 0 LOUISE VETTER CHIEF EXECUTIVE OFFICER 35.00 3.00 X 370302 0 53072 ROSEMARY COLUCCIO CHIEF OPERATIONS OFFICER 35.00 3.00 X 260173 0 29750 ARIK JOHNSON CHIEF MISSION OFFICER 35.00 3.00 X 203067 0 11418 JAMISON SKALA DIRECTOR, NATIONAL DEVELOPMENT 35.00 3.00 X 173121 0 12348 DEBRA LOVECKY DIR. OF EDUCATION PROG THRU MAY 2023 35.00 3.00 X 257479 0 17698 DEBORAH BOYD REGIONAL DEVELOPMENT DIRECTOR 35.00 3.00 X 117667 0 21815 REBECCA CHAN CONTROLLER 35.00 3.00 X 112876 0 42564 1494685 0 188665 7 0 1 0 GLOBAL GENES 28 ARGONAUT ALISO VIEJO CA 92656 ONLINE DATA COLLECTION & ANALYTICS PLATF 1125000 THE SHERATON NEW ORLEANS HOTEL 500 CANAL STREET NEW ORLEANS LA 70130 CONVENTION 615885 LIBSHAP REALTY CORPORATION 125 PARK AVENUE 11TH FLOOR NEW YORK NY 10017 REALTY 329813 J&R GRAPHICS 56 ELIZABETH AVENUE ELMWOOD PARK NJ 07407 GRAPHIC DESIGN 178158 UNIVERSITY OF TEXAS HEALTH SCIENCE CENTE 100 M STREET SE WASHINGTON DC 20003 RESEARCH & FAMIL SERVICES 130448 5 150336 1284684 2302035 5604414 199045 9341469 148433 148433 1013947 1014078 -131 -131 -131 146738 1284684 146738 0 PRIOR YEAR RESCINDED G 900099 140000 140000 OTHER INCOME 900099 94300 94300 GAIN ON LEASE MODIFICA 900099 60921 60921 48944 48944 344165 9833936 94300 0 398167 3213844 3213844 465000 465000 713296 436713 76376 200207 2658437 1619252 286873 752312 103123 63137 11042 28944 442023 278992 45106 117925 287880 176253 30825 80802 40197 40197 69438 69438 1794 1794 527605 432246 43068 52291 504591 445923 25608 33060 276997 208416 15228 53353 826445 775043 16318 35084 190928 187036 1416 2476 64997 41739 12438 10820 PRINTING AND PUBLICATIO 205789 121031 163 84595 EQUIPMENT RENTAL 193234 188193 1119 3922 POSTAGE AND SHIPPING 83102 26052 2113 54937 TELEPHONE 66362 48708 5032 12622 222366 101488 2317 118561 11157448 8829066 686471 1641911 11978915 7731455 605970 899428 182670 362270 336830 146567 16437 190263 3920368 5742903 715351 3221041 17419711 18147360 453833 444992 980273 1152674 1200 31050 797692 2649001 2232998 4277717 X 11643008 9971933 3543705 3897710 15186713 13869643 17419711 18147360 X -1323512 16442 -10000 X 0 1 X 1 0 X 10888668 8480494 12104482 10502410 9341469 51317523 10888668 8480494 12104482 10502410 9341469 51317523 2089531 49227992 27014 23523 7224 29874 148456 236091 101289 81919 87558 210357 344165 825288 52378902 0.93980 0.94210 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: OTHER INCOME - 2019 AMOUNT: $ 101,289. 2020 AMOUNT: $ 81,919. 2021 AMOUNT: $ 87,558. 2022 AMOUNT: $ 88,549. 2023 AMOUNT: $ 94,300. RETURNED GRANTS - 2022 AMOUNT: $ 121,808. 2023 AMOUNT: $ 48,944. PRIOR YEAR RESCINDED GRANT - 2023 AMOUNT: $ 140,000. GAIN ON LEASE MODIFICATION - 2023 AMOUNT: $ 60,921. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 271737 11676 283413 268745 2992 271737 268866 -121 268745 268961 -95 268866 268506 455 268961 0.88210 0.11790 0 0 147130 65555 81575 189700 81012 108688 190263 RIGHT-OF-USE ASSET 2646072 WEBSITE COSTS 574969 3221041 LEASE LIABILITY 2649001 2649001 X 10809035 16442 10404 3252082 3278928 7530107 1794 2302035 2303829 9833936 11918506 10404 3054483 3064887 8853619 1794 2302035 2303829 11157448 PART V, LINE 4: THE SOCIETY'S ENDOWMENT CONSISTS OF ONE DONOR-RESTRICTED FUND, ESTABLISHED BY THE DONOR FOR THE PURPOSE OF FUNDING MEDICAL RESEARCH IN THE FIELD OF HUNTINGTON'S DISEASE. PART X, LINE 2: THE SOCIETY FOLLOWS THE PROVISIONS OF THE FINANCIAL ACCOUNTING STANDARDS BOARD'S (THE "FASB") ACCOUNTING STANDARDS CODIFICATION ("ASC") TOPIC 740, INCOME TAXES, AS IT RELATES TO ACCOUNTING AND REPORTING FOR UNCERTAINTY IN INCOME TAXES. BECAUSE OF THE SOCIETY'S GENERAL TAX-EXEMPT STATUS, MANAGEMENT BELIEVES ASC TOPIC 740 HAS NOT HAD, AND IS NOT ANTICIPATED TO HAVE, A MATERIAL IMPACT ON THE SOCIETY'S FINANCIAL STATEMENTS. PART XI, LINE 2D - OTHER ADJUSTMENTS: REVENUE FROM HDSA CHAPTERS 3,252,082. PART XI, LINE 4B - OTHER ADJUSTMENTS: TOTAL PAYMENTS FROM HDSA CHAPTERS 2,302,035. PART XII, LINE 2D - OTHER ADJUSTMENTS: TOTAL EXPENSES FROM HDSA CHAPTERS 3,044,483. LOSS ON UNCOLLECTIBLE AMOUNTS 10,000. PART XII, LINE 4B - OTHER ADJUSTMENTS: TOTAL PAYMENTS FROM HDSA CHAPTERS 2,302,035. 1 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 GRANT MAKING 75000 NORTH AMERICA 0 0 GRANT MAKING 390000 0 0 0 0 0 0 465000 0 465000 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM MEDICAL RESEARCH 75000 WIRE 0 NORTH AMERICA MEDICAL RESEARCH 150000 WIRE 0 NORTH AMERICA MEDICAL RESEARCH 240000 WIRE 0 3 0 0 0 0 0 0 PART I, LINE 2: THE SOCIETY REQUESTS SEMI-ANNUAL FINANCIAL REPORTS FROM GRANTEES' OFFICES. PART I, LINE 3: AMOUNTS ARE REPORTED USING THE ACCRUAL METHOD OF ACCOUNTING. WALKS 721415 690644 30771 19230 8936 1200 222 1182 GALAS 198916 150428 48488 2576 11541 28347 3252 2773 16 511091 443612 67479 2409 14812 21242 1056 27960 1431422 1284684 146738 24215 35289 50789 4530 31915 146738 0 1 ADVENTHEALTH FOUNDATION CENTRAL FLORIDA 550 E ROLLINS STREET 6TH FLOOR ORLANDO FL 32803 592219301 501(C)(3) 6500 0 COMMUNITY SERVICES ALBANY MEDICAL COLLEGE 47 NEW SCOTLAND AVENUE ALBANY NY 122083479 141338310 501(C)(3) 39000 0 COMMUNITY SERVICES BARROW NEUROLOGICAL INSTITUTE 240 WEST THOMAS ROAD STE 301 PHOENIX AZ 85013 941196203 501(C)(3) 32000 0 COMMUNITY SERVICES BETH ISRAEL DEACONESS MEDICAL CENTER 109 BROOKLINE AVENUE RM 215 BOSTON MA 022155491 042103881 501(C)(3) 43000 0 COMMUNITY SERVICES CLEVELAND CLINIC FOUNDATION CENTER FOR NEUROLOGICAL RESTORATION SLEEP CTR9500 EUCLID AVE S-31 CLEVELAND OH 44195 340714553 501(C)(3) 32000 0 COMMUNITY SERVICES COLE NEUROSCIENCE CLINIC 2200 SUTHERLAND AVENUE KNOXVILLE TN 37919 311626179 501(C)(3) 10000 0 COMMUNITY SERVICES DUKE 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SERVICES 72 PART I, LINE 2: MAINTAINING RECORDS FOR GRANT ACTIVITIES: THE ORGANIZATION REQUESTS SEMI-ANNUAL FINANCIAL REPORTS FROM RECIPIENTS. X X X X 1 0 0 0 0 0 0 1 0 LOUISE VETTER CHIEF EXECUTIVE OFFICER 320565 0 49737 0 0 0 16500 0 36572 0 423374 0 0 0 ROSEMARY COLUCCIO CHIEF OPERATIONS OFFICER 260173 0 0 0 0 0 13176 0 16574 0 289923 0 0 0 DEBRA LOVECKY DIR. OF EDUCATION PROG THRU MAY 2023 128419 0 0 0 129060 0 6898 0 10800 0 275177 0 0 0 ARIK JOHNSON CHIEF MISSION OFFICER 203067 0 0 0 0 0 10133 0 1285 0 214485 0 0 0 JAMISON SKALA DIRECTOR, NATIONAL DEVELOPMENT 173121 0 0 0 0 0 8917 0 3431 0 185469 0 0 0 REBECCA CHAN CONTROLLER 112876 0 0 0 0 0 6348 0 36216 0 155440 0 0 0 PART I, LINE 3 COMPENSATION IS DETERMINED BY A COMBINATION OF A REVIEW AND APPROVAL BY INDEPENDENT PERSONS, COMPARABILITY DATA, AND CONTEMPORANEOUS SUBSTANTIATION OF THE DELIBERATION AND DECISION BY THE BOARD. PART I, LINE 4A DURING 2023, THE SOCIETY MADE A SEVERANCE PAYMENT TO THE FORMER DIRECTOR OF PROGRAM EDUCATION. PART I, LINE 7 DURING 2023, THE BOARD OF TRUSTEES APPROVED A NONFIXED PAYMENT FOR THE CHIEF EXECUTIVE OFFICER. X 0 SEE SUPP INFO X 17 162039 COMPARABLE SALES X DONATED GOODS 330 37006 COMPARABLE SALES 0 1 1 PART I, COLUMN (B): THE NUMER OF CONTRIBUTIONS ARE BASED ON THE NUMBER OF ITEMS RECEIVED. PART I, LINE 32B: THE SOCIETY IS THE RECIPIENT OF PROCEEDS FROM THE SALES OF VEHICLES THROUGH AN UNRELATED INTERMEDIARY ORGANIZATION. FORM 990, PART VI, SECTION B, LINE 11B MANAGEMENT THOROUGHLY REVIEWS AND SUBSEQUENTLY PROVIDES AN ELECTRONIC DRAFT COPY OF FORM 990 TO THE GOVERNING BODY FOR REVIEW BEFORE FILING WITH THE IRS. FORM 990, STATEMENTS REGARDING OTHER IRS FILINGS AND TAX COMPLIANCE PART 1, QUESTION 5 AND PART V, QUESTION 2A: THE SOCIETY CURRENTLY EMPLOYS 37 INDIVIDUALS. PAYROLL AND BENEFITS ARE PROCESSED THROUGH A PROFESSIONAL EMPLOYER ORGANIZATION (PEO) WHICH FILES THE FORM W-3 ON THE SOCIETY'S BEHALF UNDER THE PEO'S FEDERAL EIN#. THEREFORE THE SOCIETY DOES NOT FILE A FORM W-3. FORM 990, PART VI, SECTION B, LINE 12C OFFICERS AND TRUSTEES ARE REQUESTED TO ANNUALLY SIGN DOCUMENTATION. FORM 990, PART VI, SECTION B, LINE 15 COMPENSATION IS DETERMINED BY A COMBINATION OF A REVIEW AND APPROVAL BY INDEPENDENT PERSONS, COMPARABILITY DATA, AND CONTEMPORANEOUS SUBSTANTIATION OF THE DELIBERATION AND DECISION OF THE BOARD. FORM 990, PART VI, SECTION C, LINE 19 THE SOCIETY MAKES ITS BY-LAWS, ARTICLES OF INCORPORATION, IRS FORM 1023, ANNUAL REPORTS, AUDITED FINANCIAL STATEMENTS, IRS FORM 990 DOCUMENTS, CONFLICT OF INTEREST POLICY AND PRIVACY POLICY AVAILABLE TO THE PUBLIC UPON REQUEST. FORM 990, PART XI, LINE 9: LOSS ON UNCOLLECTIBLE AMOUNTS -10,000. HUNTINGTON'S DISEASE SOCIETY OF AMERICA 505 EIGHTH AVENUE SUITE 902 NEW YORK NY 10018 900658125 PROGRAM SRVC NY 501(C)(3) LINE 7 HDSA NAT'L 0 0 1 1 0 0 0 0 0 0 0 0 1 0 1 1 0 0 0 0